even stumbling is moving forward

I spent a good quarter of my time in university learning about how you shouldn’t make too many life changes at once. (I spent another quarter in anatomy or stressing out about anatomy, another quarter dropping classes possibly due to the unknown learning disability and ADHD, and the last quarter probably actually “focused”. This is not an accurate, nor mathematical, representation of university for me.) Yet, here I am, doing just that, because FULL SPEED AHEAD is the only way I know how to go.

So here I am. 13 days into logging with MyFitnessPal. That is nearly TWO WEEKS people, that’s an accomplishment.
I’ve opened up the Coach.Me app again last night and set up some goal in there—go for a walk twice a week, exercise three days a week, meditate daily, pray daily, and write a blog post [here] weekly (hi!). 

And today, I went for a walk. Just to the mailbox, to send a letter to my Member of Parliament. Have I mentioned I’ve gotten all politically engaged since we last spoke in depth? This is not actually a byproduct of that but still, could be why I was more interested in the Asthma Society’s Hill Day stuff in the end. Honestly, it’s a wonder to me that given the state of this world and our neighbours to the south, how the eff people can ignore this! I digress (but likely not forever, and would be happy to grab a [decaf] [not-]coffee with you and discuss. And also I am thinking about going back to school to do political science and no I don’t actually know what’s currently wrong with me.)

This is not significant. The walk, I mean. It was hot (27-feels-like-29 and heat and I are not friends—my lungs and my whole body) and slow and except whatever I GOT OUT THERE.

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Because here’s the thing. I have to start all over again. And so I am. I downloaded some bodyweight exercise app to my phone even. I’m LOOKING AT my Fitbit. Quantified self is one of those things that’s sort of engrained in my being one way or another so I need to USE that data. 

If a slow, 17 minute walk is all I get, guess what? It’s better than nothing.
If a three minute meditation before I go to sleep is all I do, guess what? I’ve started.
If prayer is a jumbled mess of words or a poem or “hey Jesus”? Yeah, my God knows where I’m at, even before I do.
If I don’t eat with any semblance of decency (or even if I’m closer than I usually am but still totally imperfect) but I am at least mindful of that, guess what? I’m one step closer.
If I start to write a blog post and I write “Listening to my body. Means. Going to sleep. Instead of writing.” and close my laptop, yes, I have figured something out. At least this time.
And if I admit all of this to you in a blog post? I’ve written the blog post. And hopefully, you’ll join me in stumbling towards those goals you think are too big, too hard, the things you think you’ll be imperfect at. Feel free to join me in the imperfection, learning the things they can’t teach in school.

Or at least watch along—because even stumbling is moving forward. 

hello, there. again.

It’s been months, literally months since I’ve written here. Probably because I’m writing other places on the internet. So here I am, wrapping up May after I haven’t written since January 30th. I have half written posts around on adventures since then, and words that have been published elsewhere (aka asthma.net). And some things that’ll never see the internet, shitty circumstances where I was somewhat stabbed in the back where I’d trusted someone and then had to clean up a mess they made–which was even more mentally time consuming than physically time consuming (if that’s even a way to explain time, in a physical sense). 

March, April, May even have involved airplanes and time invested and spent and wasted and given. 

I’ve gotten really sucked into podcasts which take more time than I realize–and I am smarter if not necessarily better for it. I’m thinking of going back to school and taking, no word of a lie, political science, even though prior to six or so months ago I had no interest in politics although I’ve been strong on voting since I could vote. At the start of May I was in Ottawa for World Asthma Day, in April, I was in Palo Alto to present at Stanford Medicine X | ED, and in March, I was in St Louis, Chicago, Washington DC, Philadelphia and Toronto on a whirlwind adventure that happened t settle around two conferences.  

Here are some (a lot, but only a sample) pictures.

Flickr Album Gallery Powered By: Weblizar

[Also I can’t figure out what I’m doing so to see the flickr album if it doesn’t load, click here.]

Not to say there wasn’t more.

There surely was.

But without writing everything down–whether here or in a journal–I’m living through Facebook and instagram and Twitter and a camera, and being in the moment, but maybe not translating that into reconstructable memories as readily. And maybe that’s okay but I think maybe I want that to change too. 

So here I am again.
Back.
Hopefully more intentionally. (Therapy.)

Because I’m getting closer–checking my Fitbit, logging nutrition with myfitnesspal (for five days now), and I actually rode the stationary bike the other day.
Now I’m writing.
Next is meditation.

Getting back to who I really am. And some (small bit of) routine.

guest post! | parenting with your eyes closed: gerry’s story

A couple of years ago, I met Gerry (one of the many friends I made hanging out in the Accessibility Resource Centre my last year of university). Since Gerry recruited me to coach goalball, he and I have spent many goalball and Starbucks related hours together, and I’ve also gotten to know his kids. Today, Gerry shares his perspective on parenting with his eyes closed, and what it’s like to be a dad who is blind.

———-

Being a parent has its challenges. Add to that the fact that you can’t see what your children are up to and it gets more interesting, especially when they realize that if they are quiet dad won’t know what they are doing. Since I am able to work from home, I have the opportunity to keep the kids on track most days. My wife does an awesome job also, but her work is out of the home.

gerry reading

So what is it like for a blind dad on a daily basis? I guess it is probably the same for any other parent who has their sight. You wake up early hoping for a few minutes of quiet time before the caos of getting ready for school begins. And then it begins…wake up the kids and get them ready and out the door in time to catch the bus, or else they are stuck taking transit with me and that is not a fun time. Fortunately my kids are pretty good at picking out what to wear for school, I just hope they have matching socks. I know mine don’t always match, but I am not usually looking at my feet anyway.

Once the kids are gone, there is a calm about the house…at least for about 8 hours. I turn into house husband doing dishes laundry and other chores around the house. Yes I do laundry! Our laundry hamper is divided so that you can put your clothes in the right section. If you don’t then I am not help responsible if something comes out a different color. So far so good, or at least no one has said anything. I will also take some time and work for a few hours as well, the bills don’t pay themselves.

There are always a few people amazed by what I can do. I have even had people wonder how I took the bus with one small child and then two children, and also a guide dog. Yes it might have been a bit of a production getting on and off the bus, but I didn’t really care. Why should I have to stay at home just because I can’t see where the hell I am going. But that is a rant for another time.

Well it is almost time for the peace and quiet to end. Now I just need to decide what to make for supper and then get the kids ready for when my wife picks us up for skating lessons.

Yes I may be blind but my day is just as busy as another parent and homemaker.

disclosure update: on AstraZeneca’s patient partnership program

While I often update my disclosures page without a whole post about it, this one needs attention called to it. Because, transparency.

Last week, I signed a contract with AstraZeneca Global, to participate in the Global Asthma Patient Partnership Program, after engaging in an initial webinar to get a feel for the experience, and receiving an invitation to join the Program for a year. I will receive financial compensation for my involvement on projects that I can opt-in-and-out of on a project by project basis. The initial webinar was also compensated by AstraZeneca.

I had hesitations. I thought long and hard. I asked questions about the contract. I deliberated alongside others in the same position; others aware of and sharing in the concerns I have about being involved as a patient with a pharmaceutical company. (You can also see this post from 2015 about going on a trip to Denver to learn about a GSK sponsored school asthma program on GSK’s tab, and my thoughts.)

AstraZeneca and its products are no longer a player in my own asthma management (I do have a Turdoza inhaler at home, although that’s a long story and is not actually one of my meds). I switched out Pulmicort for Qvar and then Symbicort for Zenhale close to five years ago. Had I been on AstraZeneca meds, this would actually be much harder, if that even makes sense, as their product(s) would be the ones keeping me healthy.

Do I think I am “partnering” with AstraZeneca? 

No, not exactly—more accurately I’d call it consulting. AstraZeneca can take or leave my feedback. I receive compensation either way. Just like I do and will write honestly, I’ll give them feedback honestly, too. Compensation won’t change that (unlike physician prescribing practices—see: Who Pays For the Pizza). I won’t be switching my meds out anytime soon. It’s likely that I won’t discuss AstraZeneca at all, which has been the case with GSK (considering I even get embargoed press releases since Denver).

Learn more about the AZ Patient Partnership Program by checking out the FAQ

Know that this is a trial run for me, too. I’m still getting a feel for this and how exactly I want to move forward. I can terminate my agreement at any time, but I am hoping that this is a positive experience—while it probably (almost certainly) won’t change how I see pharma, hopefully it changes how AstraZeneca sees asthma patients, which is maybe even more important.

Have questions? I cannot disclose anything discussed in the projects I consult on with AstraZeneca. (Nor, you know, their products/drugs, because I am not a doctor.) Otherwise, please let me know if you have questions or concerns and I will do my absolute best to address them.

Disclosure: As I have signed a contract with AstraZeneca, I provided this post for review by the Patient Engagement Director prior to publication (the only edits requested and made were referring to AstraZeneca by its full name). AstraZeneca did not ask me to write this post (rather, the opposite per the contract, although the Patient Engagement Director was encouraging). Transparency, however, is extremely important to me. I want you to know these things, so that we—as patients—can be more critical. 

ADHD and me: on mental health.

It’s #BellLetsTalk Day, which here in Canada is the one day of the year that people—for better or worse, and sometimes to just bash Bell—stop to talk about mental health. I’m not getting into the Bell thing—it’s a thing.

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What I am getting into is this country has taken the time to pause and reflect. This is awesome. I have seen so many of my friends on Facebook share their struggles and triumphs and stories of living with anxiety and depression; of going to therapy and of choosing to try medication. People who have dealt with these things since childhood, or who are navigating mental health concerns for the first time as adults. To all of you who have shared your stories—today or any other day—I am so proud of all of you. Thank you for being bold, embracing who YOU are, and sharing your journey: I hope that it makes people in your world see “mental illness” differently, and see you just the same, because you are. You are important and your story is important. Every damn day, not just today—the highs, the lows, your story is important. Every. Freaking. Day. 

I am right here with you.

ADHD is a neurodevelopmental disorder, but one that is also considered by some—including the Canadian Mental Health Association—a mental illness. Like depression and anxiety, ADHD is caused by an imbalance of chemicals in the brain, specifically neurotransmitters.

And I’ll be honest, there are days that I can’t believe that. There are days that I see attention deficit disorder as a blessing or a gift or whatever cheesy, cliche thing people say and how could that be a mental illness? How could it be something that isn’t awesome? Days that I am on my A-game, that I have witty remarks that come out the right way, and that words just fly out onto the page in front of me, and days that my energy is exploding out of me in a way that actually feels good.

Except, more often, there’s the flip side to ADHD. The self-doubt, the feeling that I can’t do things right because I have failed to meet expectations so many times, the times I cannot focus enough to figure out the simplest of things—or even when I can focus, there is information my brain simply can’t process. There are the times that not only can I not understand why I am reacting to things the way I am, but also that it is a tidal wave: my feelings just crash over me and I can’t figure out how to just stop this and react how I know is “normal”. It helps—a bit—knowing that this is common for kids and adults with ADHD alike, that we legitimately feel things more intensely and for longer than other people do [1]. But it only helps after the fact. There are the times I hyperfocus and fail to get anything done that I actually need done and only let myself down; others that I again feel like I’ve failed someone else. The words “I forgot,” or “I’m sorry,” are not less true when they come out of my mouth: I mean it. But I get it: it’s hard to accept, again, when you’ve heard it before, because it looks like carelessness. I don’t blame my ADHD—I blame myself, because ADHD and I coexist. I am not my diagnosis, but I cannot separate from it, either. ADHD isn’t just about academics: it’s about life. And it sucks when your failures or shortcomings are not for lack of trying, they are just because my brain is not wired that way.

But here’s the thing. It’s so much better than it was. It’s better knowing that there is a reason why some things are like they are. ADHD is not an excuse, but it is an explanation, if even just for myself sometimes. It’s better knowing how to figure out strategies that work rather than just feeling like I’m stupid. It’s better knowing that this is how I am wired, and that is okay

My first appointment with my psychiatrist back in 2013, she did not say it but she clearly made a note that I appeared anxious. I started medication for ADHD the next day. When I met her again a month later, early in the appointment she commented that I seemed less anxious even just on a very low dose of Concerta, and asked if I had felt anxious before. I told her that I hadn’t, but that things just “felt better” inside me. It was hard to describe—she understood. Every appointment I have seen my psychiatrist she actually asks about side effects. She asks how things are going. She asks how my mood is. Every time. Because she knows the statistics.

Research states people with ADHD are at increased risk for mental health issues: nearly half of people will experience an anxiety disorder, well over a third will deal with a mood disorder like depression, and 15% will develop a substance-use disorder. [2] However, if ADHD is managed correctly, be it through whichever combination of exercise and therapy and medication and eating well-ish, these things can either be caught early and treated early—maybe even be prevented. Maybe.
I am fortunate, I do not currently have any co-existing mental health concerns. That doesn’t mean that it hasn’t, won’t or can’t happen.

ADHD medication doesn’t give a person with ADHD any special ability to concentrate. I probably still focus less well than most non-ADHDers on 72 mg of Concerta a day. I don’t know because I’ve never had a non-ADHD brain. But do I feel better? Yes. Even though all of the above that I still struggle with. Part of it is because of medicine, but part of it is simply knowing what I am working with, knowing that other people experience this, knowing other people get me.

So, Canada.
You spoke.
I spoke.
We “talked”.
Now, don’t shut up just because Bell does.

Because we need this conversation. And we need the conversation to go further: to ensure mental health care is easily accessible—and affordable—for all Canadians. To make therapy with high-quality therapists affordable and accessible*. To ensure that services are available on demand, when people need them—weeks, or months, or years later. As a Canadian, healthcare for your body comes with the package—its a right. But care for your brain? It’s still on the table. (Which is closer than it’s been for a long time.) Stories are important, but so is access to care.

We need this conversation because we need every Canadian to feel confident they can be supported when they choose to share what they are facing.

Because my diagnosis is NOT about whether or not you believe it exists or not. It exists.

And we are living, breathing, singing, dancing proof that WE EXIST.

*Affordable and accessible therapy, to me, means to make therapy that is not income dependent or not something that is dependent on (awesome) charitable organizations like Aulneau, or educational institutions like the University of Manitoba Psych Services Centre. I’m uninsured, and if I can’t afford insurance, I can’t afford a $150 an hour therapist: which doesn’t mean that I should (or in some cases can) just wait longer.